Cancer Outcomes and Services Data Set - Children Teenagers and Young Adults

Cancer Outcomes and Services Data Set - Children Teenagers and Young Adults

Overview

Due to Covid-19, the implementation date of the Cancer Outcomes and Services Data Set (COSDS) version 9 was deferred until 1 July 2020.

Introduction

The Cancer Outcomes and Services Data Set is a compiled data set which provides the standard for secondary uses information required to support national cancer registration and associated analysis (at local, regional, national and international level), as well as other national cancer audit programmes

The standard and XML Schema consists of:

  • a set of individual data items, with their definitions

  • the assemblage of data items into discrete data sets

  • the means of flowing the data items

  • compilation of the data items into a reconciled and verified data set.

Additionally, the output supports commissioning and service development through provision of relevant information on service delivery and outcomes.

All PATIENTS diagnosed with or receiving cancer treatment in or funded by the NHS in England are covered by the standard. This includes adult and paediatric cancer PATIENTS. The standard applies to all ORGANISATIONS providing Cancer Services within secondary care. It does not apply to general practice ORGANISATIONS.

The Cancer Outcomes and Services Data Set covers diseases as defined by the United Kingdom and Ireland Association of Cancer Registries (UKIACR) as described in the  User Guide  at Appendix A and B.

Unless otherwise specified, the term cancer is used throughout the standard and related documents to cover all conditions registerable by the United Kingdom and Ireland Association of Cancer Registries.

Submission Information

Providers of Cancer Services are required to provide a monthly return on all cancer PATIENTS using the Cancer Outcomes and Services Data Set.

The Cancer Outcomes and Services Data Set  is submitted to the National Cancer Registration and Analysis Service (NCRAS) using the COSDS  XML Schema.

While the core and cancer site specific data sets are shown as separate data sets within the NHS Data Model and Dictionary, the COSDS  XML Schema integrates each core and cancer site specific set of data elements. Documentation provided on the Technology Reference Data Update Distribution (TRUD)  page at: NHS Data Model and Dictionary: DD XML Schemas gives full details of the specification.

For all diagnoses not covered by a cancer site specific data set, only the Core Data Set  should be completed. A full list of diagnoses mapped to the appropriate data set is provided in the National Cancer Registration and Analysis Service   User Guide.

Pathology

From January 2016 Pathology Laboratories across England were mandated through SCCI1521 17/2014, to collect and return structured pathology using the COSDS  XML Schema.

This replaced the current reporting to the National Cancer Registration and Analysis Service  of electronic pathology reports which were then transcribed by the  National Cancer Registration and Analysis Service into the Cancer Registration Reports. This also prevented Cancer Service  teams, for example, Multidisciplinary Teams, Pathway Co-ordinators, duplicating the work, which had been happening as part of their data collection process.

From April 2020, the pathology data can only be collected and submitted using the separate Pathology Data Set  and Pathology XML Schema. Pathology data items have been removed from the main Cancer Outcomes and Services Data Set.

This allows the Cancer Service teams to concentrate on collecting and reporting all the other clinical data required for the Cancer Outcomes and Services Data Set  and the Pathologists to collect and report the pathology items. This will reduce the burden of data collection for the Cancer Service teams and allow for more accurate pathology reporting to be submitted to the National Cancer Registration and Analysis Service.

There will be no requirement for Pathology Laboratories  to double report. Once their Laboratory Information Management Systems (LIMS) are updated to report in the COSDS  XML Schema, all other pathology reporting can cease.

Further Guidance

Further guidance for submission of the Cancer Outcomes and Services Data Set  is provided by the  National Cancer Registration and Analysis Service  at  Cancer Outcomes and Services Dataset.

Mandation

The Mandation column indicates the recommendation for the inclusion of data.

  • M = Mandatory: this data element is mandatory and the technical process (e.g. submission of the data set, production of output etc) cannot be completed without this data element being present

  • R = Required: NHS business processes cannot be delivered without this data element

  • O = Optional: the inclusion of this data element is optional as required for local purposes.

XML Schema

For guidance on the XML Schema constraints, see the Cancer Outcomes and Services Data Set XML Schema Constraints.

For guidance on downloading the XML Schema, see XML_Schema_TRUD_Download.

Specification

REFERRALS - CHILDREN, TEENAGERS AND YOUNG ADULTS (CTYA)

To carry referral details for Children, Teenagers and Young Adults (CTYA) cancer.One occurrence of this group is permitted per Core Referrals and First Stage of Patient Pathway.

Mandation

Data Elements

R

CARE PROFESSIONAL MAIN SPECIALTY CODE (CANCER REFERRAL)

DIAGNOSIS - CHILDREN, TEENAGERS AND YOUNG ADULTS (CTYA)

To carry diagnostic details for Children, Teenagers and Young Adults (CTYA) cancer.One occurrence of this group is permitted per Core Diagnosis.

Mandation

Data Elements

R

CARE PROFESSIONAL MAIN SPECIALTY CODE (DIAGNOSIS)

R

CHILDREN TEENAGERS AND YOUNG ADULTS AGE CATEGORY (CONSULTANT AT DIAGNOSIS)

DIAGNOSIS: NEUROBLASTOMA - CHILDREN, TEENAGERS AND YOUNG ADULTS (CTYA)

To carry diagnostic Neuroblastoma details for Children, Teenagers and Young Adults (CTYA) cancer.One occurrence of this group is permitted per Core Diagnosis.

Mandation

Data Elements

R

LIFE THREATENING SYMPTOMS AT DIAGNOSIS INDICATOR (NEUROBLASTOMA)

SITE SPECIFIC STAGING CHOICE - CHILDREN, TEENAGERS AND YOUNG ADULTS (CTYA)
Mandation CHOICE 1 - WILMS

To carry staging renal tumour details for Children, Teenagers and Young Adults (CTYA) cancer.One occurrence of this group is required per Core Site Specific Staging group if selected as the choice.

M

WILMS TUMOUR STAGE

Or
Mandation CHOICE 2 - INTERNATIONAL NEUROBLASTOMA RISK GROUP

To carry staging Neuroblastoma details for Children, Teenagers and Young Adults (CTYA) cancer.One occurrence of this group is required per Core Site Specific Staging group if selected as the choice.

M

INTERNATIONAL NEUROBLASTOMA RISK GROUP STAGING SYSTEM STAGE

Or
Mandation CHOICE 3 - INTERNATIONAL NEUROBLASTOMA RISK GROUP

To carry staging Hepatoblastoma details for Children, Teenagers and Young Adults (CTYA) cancer.One occurrence of this group is required per Core Site Specific Staging group if selected as the choice.

M

PRETEXT STAGING SYSTEM STAGE

M

PRETEXT STAGING SYSTEM STAGE ANNOTATION FACTORS

Or
Mandation CHOICE 4 - RETINOBLASTOMA

To carry staging Retinoblastoma details for Children, Teenagers and Young Adults (CTYA) cancer.One occurrence of this group is required per Core Site Specific Staging group if selected as the choice.

M

INTERNATIONAL STAGING SYSTEM STAGE (RETINOBLASTOMA)

TREATMENT: PRINCIPAL TREATMENT CENTRE CHOICE - CHILDREN, TEENAGERS AND YOUNG ADULTS (CTYA)
Mandation CHOICE 1 - CHILDREN

To carry Treatment details for the nominated children's Principal Treatment Centre for Children, Teenagers and Young Adults (CTYA) cancer.One occurrence of this group is required per Core Treatment if selected as the choice.

M

ORGANISATION IDENTIFIER (CHILDRENS NOMINATED PRINCIPAL TREATMENT CENTRE)

Multiple occurrences of this item are permitted

Or
Mandation CHOICE 2 - TEENAGE YOUNG ADULT (TYA)

To carry Treatment details for the nominated Teenage Young Adult's (TYA) Principal Treatment Centre for Children, Teenagers and Young Adults (CTYA) cancer.One occurrence of this group is required per Core Treatment if selected as the choice.

M

ORGANISATION IDENTIFIER (TEENAGE YOUNG ADULTS NOMINATED PRINCIPAL TREATMENT CENTRE)

Multiple occurrences of this item are permitted

TREATMENT: CHILDREN'S CANCER AND LEUKAEMIA GROUP (CCLG) - CHILDREN, TEENAGERS AND YOUNG ADULTS (CTYA)

To carry treatment details for the Children's Cancer and Leukaemia Group (CCLG) guidelines for Children, Teenagers and Young Adults (CTYA) cancer.One occurrence of this group is permitted per Core Treatment.

Mandation

Data Elements

R

PATIENT TREATED TO CHILDRENS CANCER AND LEUKAEMIA GROUP GUIDELINES INDICATOR

R

CHILDRENS CANCER AND LEUKAEMIA GROUP GUIDELINE NAME

LABORATORY RESULTS: NEUROBLASTOMA - CHILDREN, TEENAGERS AND YOUNG ADULTS (CTYA)

To carry Neuroblastoma laboratory result details for Children, Teenagers and Young Adults (CTYA) cancer.One occurrence of this group is permitted per Core Laboratory Results.

Mandation

Data Elements

R

URINE VANILLYLMANDELIC ACID CREATININE RATIO

RENAL TUMOURS - CHILDREN, TEENAGERS AND YOUNG ADULTS (CTYA)

To carry renal tumour details for Children, Teenagers and Young Adults (CTYA) cancer.One occurrence of this group is permitted.

Mandation

Data Elements

R

PATHOLOGICAL RISK CLASSIFICATION CODE (AFTER NEPHRECTOMY)

R

PATHOLOGICAL RISK CLASSIFICATION CODE (AFTER PREOPERATIVE CHEMOTHERAPY)

RETINOBLASTOMA - CHILDREN, TEENAGERS AND YOUNG ADULTS (CTYA)

To carry Retinoblastoma details for Children, Teenagers and Young Adults (CTYA) cancer.Multiple occurrences of this group are permitted.

Mandation

Data Elements

R

RETINOBLASTOMA ASSESSMENT LATERALITY

R

INTERNATIONAL CLASSIFICATION FOR INTRAOCULAR RETINOBLASTOMA

CHEMOTHERAPY - CHILDREN, TEENAGERS AND YOUNG ADULTS (CTYA)

To carry chemotherapy details for Children, Teenagers and Young Adults (CTYA) cancer.One occurrence of this group is permitted.

Mandation

Data Elements

R

CHILDREN TEENAGERS AND YOUNG ADULTS AGE CATEGORY (CONSULTANT PRESCRIBING CHEMOTHERAPY)

Also Known As

This data set is also known by these names:

Context Alias
Also known as Cancer Outcomes and Services Data Set: Children, Teenagers and Young Adults
Full name Children, Teenagers and Young Adults Data Set
Schema CTYA
Short name Children, Teenagers and Young Adults